One Hundred Names for Love: A Memoir
Ongoing studies at the National Institute of Neurological Disorders and Stroke (NINDS) are evaluating CI aphasia therapy, in which patients are asked only to use words to communicate, no gestures or other sounds. Paul mainly practiced this, and once declared: “There’s nothing my mind resists more than the canceled half-sentence!” Frustrating to be sure. So he’d occasionally add his runic templum or make cheerful mroking sounds of greeting. But he mainly insisted on speaking, however long it took.
At nearly eighty, Paul chose not to take part in clinical trials of new drugs, implanting neural stem cells, electrical stimulation of the brain, or Botox injections into the flexor muscles of his clenched finger. And, because he already had its equivalent at home, he didn’t wish to join the Aphasia Book Club, for people with trouble reading, which includes audiotapes and worksheets. However, these sound promising and might benefit others. NINDS, part of the National Institutes of Health (NIH), organizes such research and runs a host of clinical trials, with details available online.
Ignoring Timetables. People often talk about there being a “window of opportunity” in the first months after a stroke, during which one can learn most of what’s possible, and after that the window closes and learning stops. As Oliver Sacks advised us early on, and we discovered for ourselves in time, that’s simply not true. Learning is still possible at any stage or age. Years later, the brain can rewire itself. For example, just two months ago, Liz and I noticed that one aspect of Paul’s vision and memory for words had improved. We were watching him compare two typed manuscripts—an original typescript and another one with Liz’s corrections marked in red and her notes scrawled in red in the right-hand margin. He had to look from page to page, over and over, hold the words in mind, and compare the sentences—something previously hard for him to do. Now he was able to swing his eyes back and forth smoothly, quickly. This was new. After years of daily practice, his brain had finally rewired his vision for this specific skill. The result meant revising more fluently and also reading a little better. During his annual eye exam, five years post-stroke, he read the letters nimbly across each line—something he hadn’t been able to do the year before.
Shared Narrative. In the beginning, it was important for Paul to dictate whatever he could remember about his stroke. Because the process required collaboration, he was forced to socialize more, which provided a bridge from his bottled-up interior to the outside world. It offered him mental shovels and gunnysacks during a time of frightening chaos. Sandbag by sandbag, sentence by sentence, he could rig up levees against the sea of nonsense words that kept threatening to spill in when he spoke. Some aphasia therapists help patients with a similar sort of recital, and refer to the “wounded storyteller” integrating his illness into the narrative of his life.
Building a Bridge to Before. Even if Paul hadn’t been able to continue writing, I would have encouraged him to do something related to books, since they had occupied so much of his life before his stroke, and furnished such pleasure. Paul had many files of literary letters and papers to sift through, and several unfinished novels which he could take down from the shelf and tinker with. I might also have suggested he create in another medium—paint or collage—since he’d enjoyed both during an early period of his life.
I’ll never forget the impact of going to a Matisse exhibit at the Museum of Modern Art and entering a room devoted to the artist’s giant paper cutouts. Bedridden for the rest of his life after an operation, and unable to wield a brush—but still wildly creative—Matisse began scissoring shapes from paper and having helpers arrange them on the walls, building visionary landscapes. In one of my favorites, from his print collection Jazz, a black Icarus figure with a round red heart is dancing against a sapphire blue sky hung with giant yellow stars. Handless, footless, the figure nonetheless conveys the hopeful, joyful abandon of reaching for the sun. Matisse had captured in cutouts the exact bend of thighs, neck, and arms that goes with that feeling, and felt it himself I’m sure, even though he was infirm. What to make of a diminished thing? Frost had asked. For Matisse the answer was a spectacular leap of invention, because the tools available to him had suddenly become limited.
Encouraging Creativity. How hard it is to fathom subtle changes in the brain after a stroke, when tests rely so heavily on the use of words, and favor linear thinking and syllogistic logic. IQ tests measure intelligence, not creativity, which is a different kettle of ghosts. How can creativity be measured, let alone nourished? One way is through simple mind-stretching games, such as the one we called Dingbats, asking: “How many things can you do with a shoe—other than wear it?” In his pre-stroke years, Paul was exceptionally good at that sort of creative puzzle, far better than I, he being the Rabelaisian fictioneer. After the stroke, he rarely joined in. However, inventing pet names taxed and excited his imagination in a similar way. As did the Mad Libs. I praised all attempts at speech, and encouraged him to write creatively. It was different from Dingbats, but still stretched his mental muscles, and provided him with a rich sense of satisfaction.
Time-outs. Caregivers need small oases, private moments of being. Creating—plunging into the world of The Zookeeper’s Wife in WWII Warsaw, or writing about nature at dawn—offered me vital breathing space. Meditation provided another, gardening, biking, and swimming three more. Paul had his pool mysticism, I had mine. Reaching my arms long as I swam, with my chest opening wide and the water flowing continuously cool around my body, I felt like I was flying.
Some useful allies offer online help, support, and advice for caregivers: Caring Connections (caringinfo.org), Share the Care (sharethecare.org), Well Spouse Association, Support for Spousal Caregivers (wellspouse.org), Family Caregiver Alliance (caregiver.org). The Eldercare Locator, provided by the U.S. Administration on Aging, helps one find agencies in every community that can help with transportation, meals, home care, and caregiver support services (eldercare.gov; 800-677-1116).
Exercising the Brain. The more intellectual and verbal challenges one encounters, the more neurons and connections the brain will grow, so exercise is useful for either prevention or therapy. In a pinch, some of those may ward off dementia or compensate for neurons lost to a stroke by providing a mental reserve, spare brain goods in the cupboard. But one can create mental reserves at any age—even eighty—by challenging the brain and perpetually learning. It doesn’t have to be a foreign language. The ideal exercise forces the brain to give up a tired, routine, habitual way of knowing and blaze a new perspective, however small. Crossword puzzles, watercolors, a Comparative Religions course, learning Braille or a musical instrument, or becoming a gardener. Taking a sensory walk in which you focus only on smell. Reversing your walking paths, indoors and outside. Driving a different route to work or school. Showering with your eyes closed and really experiencing the shower. Eating slowly and silently, with undivided attention. Volunteering with a telephone crisis line, a charity, an environmental organization.
Or maybe taking a “Mystery Trip”—a longtime household favorite—in which one person has a destination in mind, but the other tries to figure it out based on clues in the landscape. I took Paul on an aerial Mystery Trip for his birthday one year when I was teaching in Athens, Ohio, by renting a plane and flying us north about an hour to a small field hosting an Aercoupe convention (WWII airplanes Paul had a fetish for). After Paul’s stroke, although he couldn’t read well, he learned relentlessly by watching countless science (especially astronomy and animal behavior) programs on PBS, Discovery Science, and National Geographic channels. And, by year five, helping me do the easiest New York Times crossword puzzles most evenings after dinner.
“What’s a four-letter word for a pitcher?” I sang out, stumped by a clue in the first puzzle we tried.
Counting four spaces in his mind, he had to hold those in memory, picture a pitcher, remember the image, search through his lexicon for possible words, choose a word, then attach sounds to it.
H
e scrunched up his forehead in thought until at last, twinkling with pride, he declared: “Ewer!”
“Ewer? What’s a ewer?” Not a word I’d encountered.
“A pitcher. Roman.”
He was right. Since then, with great excitement he’s come up with the likes of ethos, agora, trireme, jape, and olios, and we’ve enjoyed playing with crosswords during our end-of-the-day kickback and relax time.
Living More in the Present. After the loss of someone I had years of relating to in a certain way, familiar as the air I breathed, I sometimes had to remind myself that life is a place where good things happen as well as bad. At times it’s been hard to accept that life has changed irrevocably, and will never be the way it used to be.
Mind you, life will never be what it feels like at this moment either, because it’s a whirligig flux all day long, as trillions of sensations bombard the brain, millions of ideas and feelings haunt the corridors of the mind. Less like a single tapestry, and more like spindrift spray blown by impetuous winds along the surface of the sea. All of those dramas adhere to the self, a quixotic animal that never stops revising and reimagining who it is, while changing second by second, as new sensations winkle in, new events challenge, new thoughts and feelings well up. Our lives together, our duet, also continues to evolve, and even if we can’t go back to how it was, we’re designing a good life for us, in spite of everything.
THE ONE HUNDRED NAMES
Celandine Hunter
Swallow Haven
Spy Elf of the Morning Hallelujahs
Bow-Ribbon of the August Sky
My Little Spice Owl
The Epistle of Paul to the Rumanian Songthrushers
Summer Veil of Highest Honor
Dream Hobbit
Apostle of Radiant Postage Stamps
Ivory-billed Woodpecker of the First Rainwater
My Snowy Tanganyika
Little Moonskipper of the Tumbleweed Factory
Blithe Sickness of Araby
Divine Hunter of the Cobalt Blue Arena
Pong of the Pavilion Where Sweet Peas Go to Spoon
Parapluie of the Snowy Ecstasy
Golden Little Dreamer
Pavlova of the Morning Dew Line
Avatar of Bright April
My Little Bucket of Hair
Fierce Angel of the Marmalade Valley
Rheostat of Sentimental Dreaming
Southern Carmine Bee-Eater
Belle Dame of the Morning Pavilion
Romantic Little Dew-Sipper
Commendatore de la Pavane Mistletoe
Sugarplum of the August Faery
Edelweiss of the Blizzard Pink
Highest Massage of the Succulent Endearing Poach
Swan Boat of the Imperial Sun
Baby Angel with the Human Antecede Within
Fleet-footed Empress of Sleep
Buoyant Hunter of the Esteemed and Cosmological
Tsunami
Hummingbird of the Tricyclic Montevideo
Goddess of Abstract Conversation
Terpsichore Deladier
Delicious Pie of the Alternate Sheepfold
My Little Celestial Porcupine
Diligent Weather Sprite
Diligent Apostle of Classic Stanzas
Mistress of Wonderment
Sylvan Grove of the Endless Flare
Stanza Trance
Patient Priestess of Ever-afters
Lovely Ampersand of the Morning
My Billiard Table of the Decaying Gods
Anti-Gravity Drive of the Century
Autobiography of an Almond
Opalescent Rejoicing of an Eel
Salute to the Kitchen of Creation
My Hooray for the Atheist’s Asylum
Super-driver of History Beyond Herodotus
Buoyant Eft
Carmine Postulant of the Pleasant Voice
She for Whom All Flowers Bloom Early
Goddess of Godspell, Saint of African Violets
O Rose of Sharon, I’m All Rosy
Book-Lover of Life’s Infinite Volume
Satrap of the Endless Sky
Chasuble of the Evening-painted Cloak
Plethoric with Broken Limbs
Condor of the Light-footed Ridge
Soft Little Hummingbird Who Waits for Me
My Lawn Raider, Everlastingly Pure
Little Scarab of Delight
Lithe Swan, Why Do You Linger So Long?
Valley of the Uprooted Silver-tongued Nightingale
My Showy Sedum, My Sycamore Tree
O Singing Squirrel of the Antipodes
Elk of Bright Morning
Tumultuous Wren, Say When, When, When!
Dark-eyed Junco, My Little Bunko
Black-capped Chickadee Who Puts on Robes for Me
Skylark of the Perfect Trance
O Little Titmouse, Here in My House
Jocund Sprite of the Dew
Historic Shaman Sent to Propitiate
Moon Swivel
Flotation Ninja
My Poetic Little Starfish
Umbrella of Light
Celestial Elf
Delicate Frisson Enclosed in a Warm Bunnycuddle
Uxorious Bountiful
Inertia Canceled
Sweet Opalescent Centrifuge
My Remains of the Day, My Residue of Night
Star Equerry
Blessed Little Smile
Queen of Purple Emotions, Starlike in Their Crescendo
Telephone Fensterhorn
Betelgeuse of Bright Inquiry
My Hopi Planet
Foundling of the Here and Beyond
Pleiades of Starship Mine
Bobby-dazzler of the Golden Morn
My Moon Calf of Perpetual Ceremony
Little Flavanoid Wonder
O Parakeet of the Lissome Star
FURTHER READING
Amen, Daniel G. Healing the Hardware of the Soul. New York: Free Press, 2008.
Andreasen, Nancy C. The Creative Brain: The Science of Genius. New York: Plume, 2006.
Basso, Anna. Aphasia and Its Therapy. New York: Oxford University Press, 2003.
Beckett, Samuel, Waiting for Godot: A Tragicomedy in Two Acts. New York: Grove, 1994.
—. Watt. New York: Grove, 2009.
Bloom, Floyd, ed. Best of the Brain from Scientific American. New York: Dana Press, 2007.
Bogousslavsky, J., and F. Boller, eds. Neurological Disorders in Famous Artists. New York: Karger, 2005.
Bogousslavsky, J., and M. G. Hennerici, eds. Neurological Disorders in Famous Artists, Part 2. New York: Karger, 2007.
Bonet, Théophile. Guide to the Practical Physician. London: Thomas Flesher, 1686.
Damasio, Antonio. Descartes’ Error: Emotion, Reason, and the Human Brain. New York: Grosset/Putnam, 1994.
—. Looking for Spinoza: Joy, Sorrow, and the Feeling Brain. New York: Mariner, 2003.
Doidge, Norman. The Brain That Changes Itself: Stories of Personal Triumph from the Frontiers of Brain Science. New York: Penguin, 2007.
Duchan, Judith Felson, and Sally Byng, eds. Challenging Aphasia Therapies: Broadening the Discourse and Extending the Boundaries. New York: Psychology Press, 2004.
Fehsenfeld, Martha Dow, and Lois More Overbeck, eds. The Letters of Samuel Beckett 1929-1940. New York: Cambridge University Press, 2009.
Gardner, Howard. Art, Mind & Brain: A Cognitive Approach to Creativity. New York: Basic Books, 1982.
Gazzaniga, Michael S. Human: The Science of What Makes Us Unique. New York: HarperCollins, 2010.
Heilman, Kenne
th M. Creativity and the Brain. New York: Psychology Press, 2005.
Iacoboni, Marco. Mirroring People: The New Science of How We Connect with Others. New York: Farrar, Straus and Giroux, 2008.
Jaynes, Julian. The Origin of Consciousness in the Breakdown of the Bicameral Mind. Boston: Houghton Mifflin, 1976.
Lyon, Jon G. Coping with Aphasia. San Diego: Singular Publishing Group, 1998.
Paciaroni, M., P. Arnold, G. van Melle, and J. Bogousslavsky. “Severe Disability at Hospital Discharge in Ischemic Stroke Survivors.” European Neurology 43 (2000) 30–34.
Rhea, Paul. Language Disorders from Infancy Through Adolescence: Assessment and Intervention. 3rd ed. St. Louis, Mo.: Mosby, 2007.
Rose, F. Clifford, ed. Neurology of the Arts: Painting, Music, Literature. London: Imperial College Press, 2004.
Sacks, Oliver. Musicophilia: Tales of Music and the Brain. New York: Vintage Books, 2008.
Salisbury, Laura. “ ‘What is the Word’: Beckett’s Aphasic Modernism.” Journal of Beckett Studies, vol. 17, September 2008, pp. 78–126.
Sarno, Martha Taylor, and Joan F. Peters, eds. The Aphasia Handbook: A Guide for Stroke and Brain Injury Survivors and Their Families. Adapted from The Stroke and Aphasia Handbook, by Susie Parr et al. New York: National Aphasia Association, 2004.
Schwartz, Jeffrey M., and Sharon Begley. The Mind and the Brain: Neuroplasticity and the Power of Mental Force. New York: HarperCollins, 2002.
Siegel, Daniel J. The Mindful Brain: Reflection and Attunement in the Cultivation of Well-Being. New York: W. W. Norton, 2007.
—. Mindsight: The New Science of Personal Transformation. New York: Bantam, 2010.
Smith, Daniel B. Muses, Madmen, and Prophets: Hearing Voices and the Borders of Sanity. New York: Penguin, 2007.
Taylor, Jill Bolte. My Stroke of Insight: A Brain Scientist’s Personal Journey. New York: Viking, 2006.